Table 2.

Responses collected from the PO survey

Category	n (%)
PO contacted by/know of IMD patient with COVID-19
Yes	5/39 (12.8)
No	34/39 (87.2)
PO and/or its members in close contact with the specialised centre/HCP about the COVID-19 crisis
Yes	26/39 (66.7)
No	7/39 (18)
Do not know	6/39 (15.3)
PO informed by specialist centre about COVID-19 and its risk for IMD patients
Yes	27/37 (73)
No	10/37 (27)
Centers following IMD patients in the country that are in contact with the PO
All of them	10/36 (27.8)
Most of them (≥ 50%)	8/36 (22.2)
A few (< 50%)	10/36 (27.8)
None	8/36 (22.2)
Centers have put into place measures or alternative pathways to prevent COVID-19 in IMD patients
Yes, all of them	10/37 (27)
Yes, some of them	8/37 (21.6)
Almost none	2/37 (5.4)
None	4/37 (10.8)
Do not know	13/37 (35.1)
PO’s members experiencing changes
In follow up visits at the specialised centre
Yes	32/37 (86.5)
No	1/37 (2.7)
Do not know	4/37 (10.8)
In follow up visits for clinical trials at the specialised centre
Yes	14/30 (46.7)
No	3/30 (10)
Do not know	13/30 (43.3)
Type of changes*
Cancellations of outpatient stays	17/31 (54.8)
Cancellations of inpatient stays	10/31 (32.3)
Postponing of appointments	28/31 (90.3)
Changes in IMD treatment due to COVID-19 pandemic
Yes	20/39 (51.3)
No	19/39 (48.7)
Type of changes*
Discontinuation	13/20 (65)
Prolonged time between treatments	7/20 (35)
Switch to home therapy	10/20 (50)
Problems in getting the medication	5/20 (25)
Therapies (physio, speech, or enzyme replacement therapy, etc.) continued
Yes	10/38 (26.3)
No	16/38 (42.1)
Do not know	12/38 (31.6)
Psychological support available for patients scared about COVID-19
Yes	28/39 (71.8)
No	11/39 (28.2)
Specialist/entity providing psychological support*
Physician	8/32 (25)
Psychologist	11/32 (34.4)
Social worker	7/32 (21.9)
PO	21/32 (65.6)
Other	13/32 (40.6)
Method/technology used to provide psychological support*
Phone	25/31 (80.7)
Mail/Email	20/31 (64.5)
Video	15/31 (48.4)
Other	9/31 (29)

^*More than one answer possible